Friday, April 30, 2010

Friday Night Twins' Birthday Update

Tonight things are going pretty well.

Bekka continues to recover from her c-section and they should have her up and walking around tomorrow.

We made a visit to the twins this evening around 9pm. It's amazing how well they are doing. Both of them are on a bubble CPAP machine without supplemental oxygen. That's really incredible for 25 week babies on the day they are delivered.

Isaak has some bruising due to the delivery and his bilirubin levels are elevated. His little liver isn't really fully working at this stage of development so to help him out, he'll likely begin tanning sessions tomorrow. Penny is doing great and both of them have maintained their birth weights. They are likely to lose a bit of weight, but this is a good start.

We were able to see some really cute yawns and stretches and some funny but painful looking hiccups. Poor little guys shake their whole bodies when they do that!

If they are doing well, I'm hoping to make it by the house to scan some pictures taken by the nursing staff. (We aren't allowed to take pictures at this stage - we are anxiously awaiting the day).

The ICN staff has been fantastic - well really the whole OB and pediatric staff at WakeMed has been looking out for Bekka and the babies. Looks like we'll be seeing them awhile longer...

Thanks for the kind words, thoughts and prayers. Keep them coming as these little guys can use the support!

Babies are in the ICN and Bekka in Recovery

We are waiting for an update from the ICN (Intensive Care Nursery) staff but both looked pretty good when they took them back. Good heart rates and very wiggly. Both opened their eyes a crack when I talked to them. That was a tear inducing moment!

Bekka is doing well in recovery. They were able to do a modern c-section (across the belly) which is very good for her recovery.

More once I get to see the little guys...please continue praying!

Bekka back for c-section

More later. Little girl was just Too unstable.

Thursday, April 29, 2010

Contractions Update

So Bekka is still having contractions but they haven't gotten any stronger. They have put her on IV fluids and that seems to have lowered the frequency and the intensity.

No telling where this is headed. Best case this slowly resolves itself and we go merrily on our way. The possibility also still exists that Bekka will wind up in the OR sooner rather than later.

Overall, we are in an OK place but it surely isn't the greatest. I'll update again in the morning to let everyone know how things are going.

Contractions

A couple of hours ago Bekka began experiencing contractions. They are very erratic and not very strong but they are there. We hope this is just a random event and that it will ease off very shortly but who knows.

Both babies look great on the monitors so that's a good thing. We will update as we find out more.

Wednesday, April 28, 2010

25 Weeks, 1 Day and some Sweet, Sweet Kool-Aid

So today was another boring day. These things are great! We hope they continue unabated for some time and we can continue to mark off blocks on the calendar.

We have a couple of updates on questions we've been getting:

1. The doc indicates that we'll be having ultrasounds 3 weeks apart as that is about what it takes to show substantial changes in size and weight for the babies at this point. That means the next ultrasound will likely be around May 10.

2. Some talk had been floating about regarding another dose of steroids. It looks like that will probably occur around 28 weeks if we make it there (let's hope!). Dr. Wells says research indicates that 24 and 28 are the critical points to hit. Shots in between those time frames don't seem to have nearly as much efficacy.

In another news Bekka was supposed to have a glucose test done today. It's standard procedure for pregnant women and especially important if they are going to give you steroid (can create blood sugar issues). She drank a quart of what can charitably be described as the sweetest orange kool-aid you've ever had - then they forgot to draw her blood. So they are going to do it tomorrow. At 6am.

Monday, April 26, 2010

Quick Update.....from Bekka!!

Howdy!  I finally managed to wrangle the laptop away from my devoted hubby.  (Love ya, Neil!)  So tonight's quick update will be from the incubator herself!    =)

I'm happy to report that there's not much to report.  The bleeding increased a little bit this morning but then subsided quickly.  Of course, with an increase in bleeding came an order not to eat or drink anything from the doctor.  Oh, how I hate the letters "NPO."  I was promptly hooked up to the fetal monitors which showed that both Isaak and Penny were doing just fine.  After an hour of monitoring the babies, the doctor looked at the print out and gave me permission to eat and drink again.  So today's breakfast was more of a brunch.  I'm not complaining, mind you, as I am thrilled I didn't have to stay NPO for very long.

The biggest excitement of the day was the arrival of a large-ish dorm fridge!  One of our friends had offered to bring a small fridge from her home.  (Thanks again for the offer, Leslie!)  When I asked the nurse if that would be alright, the nurse said that she'd have to check with engineering.  Later, she informed us that engineering said they had one they could bring to my room.  And it arrived early this afternoon.  Now I can hoard yogurt and milk with abandon!  Well, that and Neil can stock it with tasty beverages and pudding cups.

On the whole, I can't complain too much about bed rest.  (Or bed unrest, depending on the number of interruptions during the night.)  It's not the most exciting thing I've ever done, but I fully realize how important it is for Penny and Isaak.  I have four calendar pages taped to my wall - one for each month from April until July.  Every Tuesday is marked with a number to designate how many weeks along I am.  Tomorrow, by the way, is 25 weeks.  And every night we cross off the day we just finished.  It's a great visual reminder of the progress we're making.  Plus, I got to use my crayons to decorate each page.

I can't thank everyone enough for their thoughts, kind words, and prayers.  This has been a bumpy ride with plenty of scary moments.  But knowing how many people are rooting for us has helped make it that much easier. 

Friday, April 23, 2010

Quick Update for Friday 4-23-2010

Bekka is doing great. She had a little light bleeding today but nothing on the scale of events earlier in the week. In fact, it's already cleared up which is quite remarkable. The twins' heartbeats were fantastic today so they seem to be enjoying their extra baking time.


On an important note (especially if you are visiting or sending something):
 
We are now in a different room: 4B22 (B as in Boy)

This makes number six (though 2 of those were for only 15 minutes at a time when we first arrived here at big WakeMed). Still no fridge ala Cary, alas.

I'd also like to take a moment to profusely thank all those that have provided a little sanity in this madness. You mowed lawns, fetched clothes and pillows, brought food, cleaned house and dropped by to say Hi. Thanks so much! This is going to be a long slog, but it could have been even crazier without all the help.

We love you guys!

Thursday, April 22, 2010

Everything is Quiet

The news is simply no news. Bekka did get a shower today and was very excited about that. They gave her five minutes and used a shower chair. I would imagine it feels pretty good after 2 weeks of intermittent sponge baths!

Baby heartbeats were good at last check. So for now you can rest the itchy refresh button fingers...

Wednesday, April 21, 2010

Much Better Night and (so far) Uneventful Day

Last night was a pretty good night. Bekka had an uneventful afternoon so the docs decided she could A) Have real food again and B) Get up to go to the bathroom. Apparently, that's a pretty big deal if you've been confined to bed for 2 weeks and Bekka is ecstatic.

Bleeding is at a very slow level. Still there, but very gradual. We hope it stays that way and isn't just biding it's time for another big event, because let me tell you that's a scary experience.

Since everything looked good last night, they have moved to 12 hour fetal monitoring. This means that the nurse does not have to come in and wake Bekka every 4 hours (and therefore myself). Bekka is probably her own best monitor by reporting any contractions or bleeding. She'll be right back on the monitors if something goes haywire, but for now, it's a much lower key existence. The result was more than 8 hours of sleep for both of us last night. We almost feel human again.

We've been very happy with the nurses and doctors at both hospitals. They're very engaged in what's going on and friendly to a fault. It's reassuring that good people with a real interest in the patients are involved. Even the food service person has taken a special interest in Bekka and making sure she gets something she likes.

That's it for now. We hope everything stays boring and I'm only writing these every couple of days. Thanks for the thoughts and prayers and comments on the blog. It means a lot.

Tuesday, April 20, 2010

Scary Night, OK Day

For now, things are OK in waiting for babies land. Bekka's bleeding stopped late this morning and hasn't reappeared yet. We don't know if she is still bleeding (the large clots suggest that she had built up some blood before it all just came gushing out). We hope not, because otherwise she's doing pretty well. Over the past few days the pattern has been for it to stop for about 18 to 24 hours and then resume. Let us hope that changes and she has smooth sailing for a while.

It was a long day as both of us had very little sleep and Bekka struggled with nausea and heartburn through much of it. This is largely due to being taken off all oral intake last night in anticipation of a possible cesarean. After they allowed her to eat a bit, she began feeling better. Overall, it was a very nervous touch and go day. In the early evening they switched her nurses from Labor and Delivery to Ante-partem. This indicates some semblance of improvement. Of course, as we know well, a 2:30am event like last night gets her switched right back to L&D

In the plus column, the babies seemed to do fine throughout the day with consistent heart rates and Bekka did not experience contractions. She was ecstatic when the doctor allowed her to go to the bathroom on her own (well, with nurse escort). She is still confined to bed, but as long as she is not contracting or bleeding, it looks like she'll be able to get up occasionally for potty breaks. When you have been in bed for almost two weeks, that's a big morale boost. 

Overnight Scare

Why oh why does it always happen at night?

In the wee hours of the morning, I became aware of our nurse in the room. I thought she was just checking Bekka's vitals but it soon became apparent something more urgent was going on: Bekka had called her because she had started bleeding again.

Next thing you know, the lights were full on, our room was full of doctors and nurses and someone was contacting anesthesiology. For 10 minutes it really looked like we were about to deliver babies. The attending physician was remarkably cool under pressure and had them monitoring the babies in no time at all. It appeared that all was well in babyland AND there were no contractions so she decided on observation.

Thus, we have fallen back into our "watch, monitor and wait" phase but with a touch more anxiety. I think last night showed just how fast this thing could happen. Somehow, they have managed to keep heart rate monitors on both babies and everything remains OK. Bekka is sleeping peacefully across the room and according to last check the bleeding is slowing again - not stopped but is slowing down substantially. She is in the Trendelenberg Position, but a very slight one and seems to be handling it fine.

What does this mean? We don't know. As I mentioned in the big post last night, there are many factors in this equation. It's possible she'll be in the operating room this afternoon or it's possible she'll do this for days or weeks. My guess is somewhere in between. In the meantime, they'll be keeping her off food and drink in case of an emergency c-section. 12:35pm will be 48 hours since the first steroid dose, so there is that!

Speaking of c-section, I don't think I'd previously mentioned that it's likely to be a "classical" c-section (vertical incision) as they have to get the preterm babies out as quickly as possible and it provides faster and better access.

So here we are. Another day, another crisis but still (in the case of Penny and Isaak) kicking.

Monday, April 19, 2010

The Doctor has been Met and Other News

Several updates and clarifications and other info in this post so close attention is warranted!
  • After meeting with the fetal-maternal medicine specialist, we have a cautiously optimistic outlook (very cautious mind you).
  • He re-emphasized that the greatest risk with the ruptured membrane is infection, so they will be closely monitoring for that via blood work and body temperature.
  • Looking at the ultrasounds, we know that the little girl weighs in at about 1lb 2oz and the little boy at 1lb 6oz. She's right on schedule for her fetal age and he's well-above average.
  • We asked about the amniotic fluid level and he indicated that while it's a concern, she does still have pockets of fluid around her and is continuing to produce fluid. As it was almost 23 weeks when the big rupture occurred, it's likely that lung development had already begun. Had rupture occurred at 20 weeks there would be more reason for concern. Still, lung development is one of the most critical risks in all this and she is at a disadvantage compared to the little boy. Thankfully, we did get two steroid shots.
  • At this point, they are just going to let Bekka sit and bake the babies with periodic monitoring. As we reach 24 weeks tomorrow, if labor starts they will not stop it. Labor starts for a reason, be that infection, further membrane rupture or increased bleeding and it could be dangerous to both Bekka and the twins to halt it.
We are currently located in room 4B34 at WakeMed Raleigh Campus. Visitation hours are 11am to 8pm. Note that WakeMed rules prohibit all children under 12 from visiting the Women's Pavilion. Park in deck P5, go to the red awning and walk down the very long hall to elevator A/B. Go the fourth floor and check-in at the desk. There are usually helpful ladies in the kiosk near the entrance that can help you out. It is not unlikely that we will change rooms again, but the security desk keeps track of all that.

We are more than happy to have visitors, but Bekka needs to have her rest so please check in before you decide to pop over. Robin Banker and Amanda Milloway are going to try to set up a care calendar that would allow visit scheduling/meal bringing, but for the time being, you can just drop us an email or phone call.

Also, we both love flowers, but due to space limitations, if you want to send something, please consider donating to the Claire Altman Heine Foundation in memory of Ollie.

Finally, we've had a lot of questions about the babies' names. Bekka and I had been working on a list of names for some time. We had a few favorites but still had not settled. Given the gravity of the situation, we felt it was important that we name these little guys. The boy will be James Isaak Mastin, and following in family tradition, we will use his middle name and call him Isaak. The little girl will be called Penelope Elise Mastin, Penny for short.

Bekka is currently doing well, with no contractions and minimal bleeding this evening. We don't know how long this will last, but each hour is a gift.

Monday Afternoon - 4-19-2010

Our up and down ride continues, this time with a bit of an uptick compared to last night's post. Bekka's bleeding has slowed dramatically. Unlike the last episode while were still at WakeMed Cary, last nights bleeding was only heavy for maybe an hour and a half. Overnight, there really was only heavy spotting and that continues today. It's not ideal for bleeding to be occurring at all, but this is certainly better.

Both babies did well overnight. As predicted, the "all night" monitoring did not occur because the little monkeys were simply moving around too much. Instead, they have done a couple of 1/2 hour monitoring sessions. Heartbeats look good and so does Bekka's lack of contractions.

Bekka received the second (of two) steroid injections around noon and then this afternoon, they conducted a detailed ultrasound in preparation for a meeting with the chief fetal-maternal medicine specialist here at the hospital. We hope he can put the whole situation together for us. We've had a parade of attending and resident physicians through the room and they've all been great and we certainly feel like someone is looking out for both Bekka and the little ones.

In much more mundane news - they found a sleeper chair for me. A recliner with wood-topped arms does not a comfy bed make. I'm shooting for more than 4 hours of sleep this evening ;)

Sunday, April 18, 2010

Evening Update - 4-18-2010

Bekka began bleeding again this evening. It is lighter than last night but any bleeding is concerning. We just saw one of the doctors, and based on the evidence she decided to do a speculum exam and quick ultrasound. The good news is that the cerclage is holding and does not appear to be under stress.

Based on this and the ultrasound evidence, it looks like there might be a small tear in the little girl's placenta (abruption). This can be caused when the uterus contracts around the baby (say, due to amniotic fluid loss after a rupture) and the placenta tears away from the wall of the uterus. Bekka is not in any pain and is not having contractions which is a good sign that it's a small tear (if that's what it is). They have put both babies on the heart rate monitors full time..well, trying to as they are awfully small for that and tend to move around too much! Bekka is back on full time toco monitoring looking for contractions.

Abruptions can be dangerous to both mother and baby, but the smaller they are the better. Yes, it's more drama in an already dramatic situation but knowing is always better. They will be looking for any signs of rapidly dropping heart rates for little girl and excessive bleeding for Bekka. Either one could trigger an emergency c-section. Let's hope not for a while yet!

At WakeMed Raleigh - 4-18-2010 Update

Good news: We are at WakeMed

Bad news: We now have a better idea of the type of situation we are in. It's pretty scary.

Having met with the attending and resident physicians we know it's pretty remarkable we are here based on what's happened the last week and a half. We are going to have a tough road ahead. They are stopping all antibiotics once the treatment course is done (to avoid creating super bugs in Bekka) and ceasing all tocolytics (anti-contraction meds). Apparently, Bekka has already had more courses of more types of tocolytics than is normal. They may give her another round if she begins having contractions so they can give her two steroid shots. The steroids are absolutely critical for lung development in preterm babies and are most effective if delivery is delayed at least 48 hours after the first shot. This would mean trying to wait until at least 12:35 on Tuesday (4/20) to deliver.

Ideally, Bekka just hangs on and doesn't deliver for a while AND there are no infections. That's the big if right now. Theoretically, they could delay labor indefinitely, but because she experienced a ruptured membrane (PPROM), infection is a great risk to both mother and babies. Sepsis is a very real concern so doctors have to maintain a balance between keeping the babies in utero and avoiding infection.

So now we wait some more and pray some more. It seems very unlikely based on all the new information that we will be able to hold off delivery until 30 weeks. Even if Bekka does not go into labor, it's likely we will not be able to wait due to the infection risk.

It wasn't supposed to be this hard. Not after what we went through with Ollie. Unfortunately, chance is a cruel foe.

Friday, April 16, 2010

Afternoon Bekka Update 4-16

Bekka is doing better now. The bleeding is pretty much stopped, they took her off magnesium sulfate, and she spilled soup on herself. Ok, so the last isn't good, but she's fine and now the room smells like chicken broth - could be worse.

They have placed her on a different tocolytic with fewer side effects. Hopefully one drug is enough and she doesn't have to be on two or go back on the mag (which makes her feel positively awful).

One of the docs came by today and did an ultrasound. It looks like there is a bit more fluid around the little girl (hard to say for sure as it was not the nicer ultrasound used by the techs). Compared to last Sunday, it really appeared to these amateur eyes to be a better situation. As usual, the little boy is just swimming around like nothing is wrong.

Based on the current situation, there are plans to move us to the main WakeMed hospital on Sunday, pending availability of NICU beds. They will likely give a two day course of steroids beginning Sunday morning to spur lung development.

Keep the prayers, thoughts and vibes coming and I'll keep the updates flowing. I really hope there isn't much of a need.

Not a No News Morning

Today, the news is not so positive.

Bekka had a run of light to moderate contractions overnight. It was significant enough that they put her back on an IV drip of magnesium sulfate to stop them. That is a misery inducing medication they had her on the first couple of days. Unfortunately, this was also accompanied by bleeding/leakage. This has slowed greatly, but we don't know why it occurred or if it's significant. Bekka has specifically asked that I stay with her today (before I had a chance to ask her if I should - that tells me she is not feeling well).

I will post later if we learn anything or the situation changes.

Thursday, April 15, 2010

No News Really is Good News

I'm happy to say I have nothing to report this morning. Bekka was having another nausea and heartburn bout when I left, but everything else looked great. The nurse was able to get good heartbeats right off the bat. As far as I know, we are still on schedule to go to WakeMed early next week. I probably won't make another post until that happens or we have any significant updates from the doctors.

Right now, boring is a very good thing.

UPDATE: I've had a few questions about whether we've had another ultrasound to look at the fluid levels. The answer is no. The doctor has indicated they will probably do one after transfer to WakeMed, but there isn't anything they can do medically right now based on the information. Yes, we'd like to know as much as everyone else but it looks like we'll have to wait a few days!

Tuesday, April 13, 2010

Day 5 in the Hospital

Bekka did pretty well today. Her potassium was a bit low so they put her on IV supplements. She also had a bout with nausea. This could be caused by any number of drugs or could just be pregnancy related. Poor thing was sick right up until Ollie was delivered and has had definite problems this time around, though not as severe.

The babies still have good heartbeats and Bekka indicates they are moving around a lot. No ultrasound today, so we do not have any news on the amniotic fluid levels.

Overall, this is a "no news is good news" day. Now we need about 10 more weeks of these...

We were also told that if everything continues apace, we should be able to get transferred to the main WakeMed campus Sunday or Monday of next week.

Twins, Hospitals and Amniotic Sacs

A business trip took me away from home last Tuesday (4/6). I was a little worried about leaving 5 month pregnant Bekka and the little guys in her belly alone for 3 days, but everything looked great! She'd had a 20 week ultrasound that indicated the babies were healthy and growing and generally just frolicking away their time in the womb. On 4/5, she'd been to the OB and everything was looking solid. So I went to Dallas without much worry at all.

The workshop was very productive and enjoyable, but on the way back, things began to get complicated. Storms in Atlanta (how I hate that airport) were backing up all flights and my flight out of DFW didn't leave for 2 hours and only after 3 gate changes. The only good news was that my flight to Raleigh was equally delayed because the same crew was flying us home. After 3 more gate changes, we finally boarded. I'd turned my phone off around 12:30am (this would be early Friday morning at this point) as we were preparing to pull away when it suddenly rang (HOW?). It was Dave trying to reach me. I thought he might just be razzing me for being so late, but after 3 tries to connect, we finally did and Bekka was immediately on the phone.

Dave was at my house.
Bekka sounded calm but scared.
This isn't good.

And it wasn't.

While going to the bathroom that night, Bekka noticed an unusual amount of blood. All women get a bit of spotting here and there during pregnancy but this was more than that. Further, there was something protruding that "felt and looked like a bouncy ball." She knew immediately it was her amniotic sac and went to lie down. She called the OB, EMS and Dave. Because our OB works out of Cary, Bekka had the EMS take her to WakeMed Cary.

While waiting for the EMS to arrive, she had Dave call me. So I'm stuck in a tin can at the crappiest airport in America, my wife might be losing her pregnancy and I know it's going to be 2 or 3 hours before I can see her.

I do not recommend this.

I finally made it to the hospital at about 3:30am. Bekka was resting (somewhat) comfortably with her feet higher than her head. I now know this is the Trendelenberg Position. At this point, it did not appear that the amniotic sac had ruptured, but it was still protruding from the cervix when she was examined. This was in a effort to get the amniotic sac to withdraw on it's own back into the uterus.

Thus began our up and down saga of the last few days.

Much of this has been posted on Facebook and via email, so some of you know what is going on, but suffice it to say that a risky but non-optional emergency cerclage was required on Sunday morning, as she was about 7cm dilated. The operation involved using a balloon catheter to push the amniotic sac back into the cervix and slowly, incrementally stitching it closed. Bekka has slowly improved over the last day and a half after experiencing pulmonary edema after surgery. Leakage of fluid also seems to have slowed greatly.

The little girl lost a lot of fluid from her amniotic sac (it is guessed through a leak high on the amniotic sac as the doctor could not see an obvious rupture). The little boy's amniotic sac appears to be intact and full. Both of them have maintained strong heartbeats and we hope that the little girl's sac will heal and refill as amniotic fluid is critical for lung development in tiny babies.

Right now the biggest risks are the onset of premature labor (Bekka is receiving meds to slow/prevent this) and infection. With a ruptured sac and the protrusion into the outside world, contamination is a great danger and any infection can spread from baby to baby and to the mother. She is on two types of antibiotics to fight the infection danger.

24 weeks of gestation is considered the cutoff for preterm survival with a reasonable chance of avoiding brain damage and major physical handicaps. The babies will be 23 weeks tomorrow (4/13). We will be trying to get transferred to a hospital with a full Level 3/Level 4 NICU at the end of this week. Such a facility offers the best chance of healthy survival in case she delivers. In this area, that is WakeMed (main hospital), Duke and UNC. Obviously, the best case is that everyone does fantastically well and we can get way beyond 24 weeks. Full term delivery is very very unlikely, but getting anywhere near 30 greatly increases survival chances and infant health.

So:
Emergency Cerclage
Low fluid level in the little girl's sac
Normal fluid level in the boy's amniotic sac
Currently stable and holding
High risk of infection
High risk of early labor

Thank you all for the prayers and love that have come our way. We never imagined we'd have to call on our community of family and friends so soon and certainly did not want it to be in this way.

Stay tuned here for postings as things progress. We are not in a good place, but given the situation, it's as good as it could be.

Monday, April 12, 2010

Good News and Scary News

It's been over 2 months since we have posted on Ollie's blog. We didn't intend for it to be that long, but life has been busy and we have been busy.

Boy howdy.

We are trying to make Ollie a big brother.

Some of you may have found out through Facebook or email or from friends and family but I know many did not. We'd always intended to use this wonderful place as a way to keep communicating with all the wonderful people that followed and prayed and helped that insane year of our lives. For one reason or another (mostly nervousness, I think), we never quite got the information up.

Before he passed away, we'd already begun discussing having more children (we'd hoped Ollie would get to see them, but knew that was sadly unikely). Last fall we begin meeting with the doctor's at Carolina Conceptions about conceiving children, hopefully unaffected by SMA. In the end, we decided to pursue In Vitro Fertilization (IVF) with Pre-implantation Genetic Diagnosis (PGD).

As fate would will it, we wound up with two embryos that were indicated as unaffected and those were transferred to Bekka in November. Both implanted and she became pregnant with twins: A boy and a girl. We were overjoyed (ecstatic even!).  Being cautious types nowadays, we decided to keep news of this quiet until we were sure all was progressing well. An amniocentesis performed at the end of February confirmed that the babies were SMA carriers but otherwise unaffected.

That's the good (no, GREAT) news.

Now for the Scary News.

We'll be making regular blog updates for awhile because Bekka's in the hospital. Babies aren't supposed to arrive at 22 weeks but these little guys tried and we are trying to stop them mightily. I'll sum up what has occurred so far in the next post. If you have been following on Facebook, this will be the place to go (but I'm cross-posting so you should just be able to click over).